Hot Topics and Readers’ Notes – 04-11-12

Kudos to Sophie Lee’s IBS Tales Site

If you have irritable bowel syndrome or think you might, visit Sophie Lee’s site. Sophie, the author of Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome, offers a site featuring IBS basics and a news blog; more than 600 personal stories (happy, sad & embarrassing tales) contributed by IBS sufferers; and more than 1,000 patient reviews of IBS treatments (drugs, supplements, diets, therapies, and books), but absolutely no medical advice.


Docs They Found in ‘Good MD’ List were Worst EVER

Re: “Another Database of ME/CFS Doctors” noted in April 4 ‘Hot Topics’ with the caveat that not all MDs in such listings are patient recommended.

The Dr listed for my town is the WORST doctor I have ever gone to. She literally got mad at me for being allergic to the meds she suggested. When I told her that I have always loved exercise (used to run marathons among many other things) but had to recently stop doing some of the previous forms of it, because it was making me significantly worse, she pushed me to keep doing it and to increase it. (And she did so in a manner that clearly said that she did not believe me.) She was just generally very rude and very late for the appointment. Oh and the exercise and drugs were the only things she suggested at all.

Hopefully the other Drs listed are not as bad, but if that is any indication, I wouldn’t go with anyone on there. – A

Yeah, I feel you. One of the doctors for [my state] doesn’t believe FM is a real disease, but there he is, listed as a resource for people seeking help. How can he be a good doctor if he doesn’t believe your disease is real? – E


Dr. Lerner’s Energy Index Point Score® for Fatigue Severity

ME/CFS doctor Martin Lerner, MD, director of the Michigan-based Treatment Center for CFS (, has made a summary of his research findings freely available for patients & physicians. Among the resources he offers are “A Primer on ME/CFS” (a video explanation plus downloadable slide presentation) and a downloadable “ME/CFS Treatment Resource Guide for Practitioners.” Dr. Lerner is known for proposing CFS is caused by latent viral infections (EBV, HCMV, HHV6); for trials treating patients with the antiviral Valcyte; and the finding that a patient subset with herpesvirus but no co-infections improved with valcyte treatment.

One particular tool offered in this collection of resources is his Energy Index Point Score® system for gauging and tracking patient energy/disability.

__________________________ Wants Your Personal Video

We are very excited to invite you to submit a video for our campaign, Invisible No More! Simply set up your camera, turn it on and share your story.

As you know, living with an invisible disability can be additionally challenging when loved ones do not understand. Sadly, friends and family often assume a person is exaggerating, unmotivated, not trying hard enough, not wanting to get better, failing to pay attention or simply being lazy. The purpose of this campaign is to bring awareness of invisible disabilities and share true life stories to bring about respect, belief and better understanding to those living with various conditions.

[Go to and scroll down to find instructions & watch samples of video clips submitted so far by people with POTS, MCS, ME/CFS, FM, and more.]

Invisible No More TV Channel (


Tips for a Vacation with Chronic Illness

Jennie Spotila, ill with ‘chronic fatigue syndrome’ since 1994, disabled, and mostly housebound… blogs about living with CFS at “I wish there was a magic pill that would allow us to take vacations from CFS,” she writes in “Tips for a CFS Vacation,” published Apr 3, “but in the meantime, here is some of what has helped me while traveling: 1. GO!” Read more here (Link thanks to CFS Solutions of West Michigan.)


Patient is Blogging on Her Rituximab Therapy Experience

Kati, a disabled athlete from British Columbia, blogs at Chronicles of the Reluctant Bike Commuter ( On Tuesday she presented at a clinic in San Francisco as a patient of Dr. Andreas Kogelnik to begin experimental treatment with rituximab, sponsored by the Genentech Foundation. Rituximab is a chemo-type drug that has shown preliminary promise for treatment of ME/CFS, and Dr. Kogelnik, director of the Open Medicine Institute, “is currently the only doctor in the world willing to treat neuroimmune patients with a combination of potent antivirals and rituximab,” Kati wrote in an earllier post on March 14. We’ll stay tuned to follow her progress. (Link thanks to XMRV Global Action Facebook.)


Therapist Believes Caregiver Burden Often Leads to Fibromyalgia

I am a licensed massage therapist; have been for nine years. One commonality that I know of is that people with fibromyalgia are usually people who have to take care of other people, like thir dad , mom, son, etc.

One other commonality I found was not only did they have to take care of other people, but at some point in their life they had to suppress a sickness in their body to take care of the particular person. For example, they were working two jobs to survive so they could take care of their kid. They felt sick but didn’t let it process in their body.

Years later they ended up with fibromyalgia. Just my experience and wanted to share. Thank You – J


California Court Rules for ME/CFS Patient in Disability Insurance Suit

In reaching a decision in favor of disabled CFS patient Judi Peterson vs AT&T Umbrella Benefit Plan No. 1, administered by third-party administrator Sedgwick CMS, the US District Court for the Northern District of California noted that the insurer and the medical professionals hired to review the patient’s records had “abused its discretion in five specific ways.” See news release here.

For example, after initially finding that Ms. Peterson suffered from disabling CFS in 2006, and though the evidence showed her condition had remained unchanged, they terminated her benefits in 2009. “This decision illustrates that policymakers cannot always rely on an ‘unbiased’ third-party administrator to make logical and fact-based benefits decisions,” says the lead attorney who represented Ms. Peterson. “Denials must be carefully scrutinized, and if the conclusions appear unfair, incorrect, or ridiculous, they probably are.”


MSM (Bioavailable Sulfur) Shouldn’t Be Confused with Sulfa Drugs

Re: “Sulfur & MSM: Often Overlooked Foundation of Energy, Muscle & Joint Health” by Dr. Mercola

Dr. Mercola included a warning about a possible allergic reaction to products with sulfur if one has an allergic reaction to sulfa drugs. I have side effects from sulfa drugs but never had any problem with sulfur products like MSM [A naturally-occurring bioactive form of sulfur known as an antioxidant and building block of joints and other connective tissue.] The difference between organic sulfur and sulfa drugs looks to be such that there little cause for worry, at least as far as I am concerned. The article in the following link included a good explanation about this: (“Differentiating Sulfur Compounds” – – R

Note: Thank you for the informative link. We have heard this also, so conclude Dr. Mercola chooses to err on the side of caution in this matter.


Conveying CFS Impact to MDs

Re: “The Difference Between Activity Limitation and Fatigue” by Dr. Bell

• This doctor posits that if we quantify our fatigue it will help our physician understand CFS. Not only does he provide sound reasoning, he also shows HOW TO make this method work with numbers and charts. I plan to print this out and begin keeping track of my numbers as this article suggests. – L

• [As a former professional dancer] …I have yet to ‘meet’ a former professional dancer that has been open about having ME/CFIDS!… I think there are many more of us out there, but with the ridiculous stigma, no one is coming forward… I wish all of the celebrities with ME/CFIDS would do something already. I know of two very famous ones who have said they “had” CFIDS but are “cured.” Yeah, right! LOL. They’re both very famous singers/actors. We need famous people to speak up for us and help raise awareness. We can’t do it ourselves, but despite all the constant obstacles, I won’t give up! 🙂 – B


Mayo Clinic (MN) to Launch Whole Genome Breast Cancer Study

“We are living in an era that I never thought I’d see during my career – when we can sequence, in real time, the entire genome of a patient and her tumor and use that information to tailor treatment to the individual patient,” says Richard Weinshilboum, MD, director of the Pharmacogenomics Program in the Mayo Clinic Center for Individualized Medicine.

According to a Mayo Clinic, Rochester press release issued Apr 9, “The Breast Cancer Genome Guided Therapy Study (BEAUTY Project) will help physicians tailor chemotherapy to breast cancer patients based on their individual genomes and the genomes of their tumors. Mayo Clinic researchers will obtain three whole genome sequences: one from the patients’ healthy cells before treatment, and two tumor genomes – one before chemotherapy and one after. Patients will be paired with mouse ‘avatars’ that will help physicians identify the best treatment for each person.” Links to Mayo appointment & contact information are found at


Minnesota Firm to Trial Ribose as “Fibromyalgia Drug”

A Minnesota dietary supplements firm has divested its former businesses and will use the proceeds to focus on a clinical trial of ribose as a “drug” for fibromyalgia symptoms. Ribose, currently a popular dietary supplement, is a bioactive 5-carbon sugar (pentose) that plays a different role in the body than typical sugars – it doesn’t raise blood sugar but rather is the main molecule in the body’s synthesis of energy compounds such as ATP. (See “Ribose: A major component of the ‘energy molecule’ ATP.”)

Working under an FDA investigational new drug application, the Minnesota company – RiboCor – indicates it hopes to complete phase 2 patient trials by the end of 2012. (See press release.)


Let it Be? Heart Attack Pain Triggers Healing Substance

Use of morphine to help with pain during a heart attack may seriously impede long term recovery, according to research led by Dr. Paolo Madeddu at Bristol University. The researchers have determined that pain signals from the cardiac nerves during a heart attack (when a blood clot blocks an oxygen-supplying artery) mobilize a molecule called Substance P which actually “helps to attract stem cells to repair the damage.” In time the stem cells may restore some blood flow by generating new blood vessels that bypass the blockage. The researchers envision harnessing this discovery to supplement the body’s natural healing mechanism.


Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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